Action Plan

Established in 1966 by Kenneth Newton Wright, the parent of a disabled child, MacIntyre has grown to become a leading national charity, highly respected and committed to setting standards and increasing choice. We provide learning, support and care for more than 1,500 children, young people and adults who have a learning disability and/or autism, at more than 150 services across England and Wales. Our diverse range of services includes registered care homes, supported living, outreach, accredited training schemes and lifelong learning services, as well as a residential special school and further education provision.

Commitment 1 - Relating to:

People with a learning disability have a greater risk of developing dementia than those who do not have a learning disability. These are a group of people who are often marginalised and do not receive an equitable health care service. Awareness of the increased risks for people with a learning disability to develop dementia is limited among both the general population but also within health and social care.

 

How will your organisation achieve Commitment 1?

 

The MacIntyre Dementia Project is succeeding in raising awareness about dementia and learning disability. Feedback from people we support, MacIntyre staff and other organisations suggested that they knew more about dementia as a result of the Project and our resources. We surveyed MacIntyre staff at the beginning of the Project in mid-2016 and at the end in October 2018, after resources had been available for one to two years. By the end of the Project, 100% of staff surveyed said they knew what dementia was, 91% said they knew quite a bit about dementia, 98% said they knew the symptoms to look out for and 89% said they were more confident looking out for dementia than one year ago. All of these proportions were significant improvements compared to when the Project began. The MacIntyre team and representatives from other organisations felt that the Project had started to shift the way that people with a learning disability are considered when thinking about dementia and dementia services. Some health, social care and voluntary sector organisations said they had never thought about learning disability and dementia together before. This impact was recognised nationally, with MacIntyre winning a 2017 Dementia Care Award and two awards at the 2018 National Learning Disability and Autism Awards. MacIntyre partnered with a number of organisations to achieve the aims of the Project, including the Alzheimer’s Society and Dementia Action Alliance to create a range of resources and approaches to raise awareness across other organisations. All resources developed for the Dementia Project are being made freely available online so other organisations, health professionals and families can use them.

  • We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.

Commitment 2 - Relating to:

The MacIntyre Dementia Project is committed to improving the processes MacIntyre uses to help people receive a timely diagnosis of dementia. We are training staff about the signs and symptoms to look out for and introduced new simplified ‘health recording’ documents to keep good records about people’s health and track changes over time. These records may help alert staff when something is changing which may in turn prompt referral for assessment and help with timely diagnosis.

 

How will your organisation achieve Commitment 2?

 

The Dementia Project could not easily change how promptly people were diagnosed with dementia because diagnosis depends on health professionals outside MacIntyre. At the start of the Project, 2% of adults supported by MacIntyre (25 people) were diagnosed with dementia. Although the proportion of people diagnosed did not alter, staff and managers thought that staff were more aware of what to look for and when to refer people for assessment. By the end of the Project 91% of staff said that they were more confident looking out for the signs and symptoms of dementia than one year ago compared to 49% at the start of the Project. Correspondingly, the number of people officially recorded as suspected of dementia rose from 24 in 2016 to 33 in 2018. This was only an increase from 2% to 3% of the total number of adults supported by MacIntyre, but is a tangible demonstration that signs and symptoms of dementia are being officially noticed and recorded.

  • We have the right to an early and accurate diagnosis, and to receive evidence based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.

Commitment 3 - Relating to:

The Dementia Project is working towards training staff to provide better care for people with dementia. Between April 2016 and October 2018 the Project team ran 183 training sessions for MacIntyre teams and this will continue throughout 2019. The Project team are also committed to visiting services to provide advice and support about ways to improve care for people with dementia. During the Project, the 32 available modules and ebooks were completed a total of 6,377 times by MacIntyre staff, and we hope this number increases even more in 2019. All resources are available free on our website too for other organisations to access.

 

How will your organisation achieve Commitment 3?

 

  • Different areas and teams require different approaches. It is important to have a flexible approach, be able to think outside the box and adapt plans for training or advice to be more appropriate for local teams. Resources should be developed to target various learning styles
  • People supported by MacIntyre can and should be involved in Project activities. This not only strengthens the Project, but can make a significant difference to the knowledge and confidence of the people supported
  • It takes time to embed new tools and processes into a service, and continual follow up and consistent approaches from core teams are needed to provide support while new approaches are tested
  • Having a core team available to answer questions and provide reassurance is important as frontline teams like speaking with people rather than solely reading resources
  • It is important to ask people to take action, perhaps using action plans or providing examples to encourage people to do something differently after training.

  • We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society. Our diagnosis should not define us, nor should we be ashamed of it.